Board of Directors
and Advisors

Carissa lives in Seattle with her husband and 3 boys. Caleb, her oldest, has an ARID1B gene variant and has been her greatest teacher and driving force for her passion towards equity, belonging, and inclusion. Carissa has had many roles in the growing of the Foundation over the years, and currently serves as the Chair/President.

Simon Gale, originally from Perth, Australia, lives in Florida with his wife Suzanne and their younger daughter Victoria, who has ARID1B-related Coffin–Siris Syndrome (CSS). His older daughter, Juliette, lives in Boston and remains an important part of their family’s world. Their experience with CSS has strengthened Simon’s connection to the community and inspired his commitment to supporting families on a similar journey.

Professionally, Simon serves as the Senior Director of Racquet Sports Development at the USTA National Campus in Orlando, Florida. With more than 25 years of leadership experience, he has managed large racquet sports facilities, guided multidisciplinary teams, and developed operational structures that support long term growth and excellence across the industry.

He aims to combine his personal journey and professional expertise to make a meaningful impact through the CSS Foundation.

Kristen lives in Westfield, New Jersey with her husband and two boys. Her younger son Keegan was diagnosed with agenesis of the corpus callosum in utero and CSS – ARID1B in 2021. Kristen joined the Board of Directors as Treasurer in 2024 and also chairs the Research Committee.  Kristen has found an invaluable support system and wisdom within the CSS community and is excited to contribute to the great work being done to support fellow CSS families and raise awareness.

Becky lives in Fredericton, NB, Cananda with her husband and three kids. Her middle child, Henley, was diagnosed with CSS- SOX 11 variant in late 2022. Becky joined the Board of Directors as Community Development Coordinator in 2023. Becky has become the CSS resident Social Worker, delivering highly impactful emotional talks and groups at conference and throughout the year. Becky truly believes in community and makes it her personal mission to help people connect to and with the CSS community. She does this though her work with the Self-Advocate Advisory Board, and her monthly teen/adult and caregiver groups. She continues to find new and exciting ways to connect the CSS community far and wide.

Katie lives in Hilliard, Ohio, with her husband and their beautifully blended family. Her son Auron was diagnosed with an ARID1B gene variant in 2016, inspiring her passion for connecting with and supporting families navigating a rare diagnosis. Since 2019, Katie has volunteered with the Coffin-Siris Syndrome Foundation, helping establish the New Diagnosis Welcome Packet initiative. She currently serves on the Board of Directors as Communications Lead, helping families feel welcomed, informed, and connected through outreach, resources, and community engagement.

Shea is married and the father of three boys. Caleb, his oldest, has an ARID1B variant. They received his CSS diagnosis in 2015. Shea and his wife Carissa founded the CSS Foundation in 2017. Shea is an engineer in product design in Seattle.

Gaylen and her husband Nate are the proud parents of two children. Her daughter was diagnosed with CSS – ARID1B in 2021. Gaylen is thankful for the community that the CSS Foundation has nurtured. Gaylen served on our Board from 2022 through 2026, and now serves as an advisor, while continuing to support our advocacy work. Gaylen is a school social worker with the NYC Department of Education. She lives with her family in Queens, NY. 

Brion is married with 2 children. Carter – his youngest – has an ARID1B variant. In his spare time, Brion enjoys riding motorcycles, UTV’s, and all things powersports related. His true passion, however, is his family. Together, they make their home in Salt Lake City, UT.

Dr. Vergano  serves as a medical advisor to the Coffin-Siris Syndrome Foundation. She is the Medical Director of Outpatient Services in the division of Genetic Medicine at Seattle Children’s Hospital, and a Professor of Pediatrics at the University of Washington. Dr. Vergano developed an interest in CSS during her fellowship in medical genetics at the Children’s Hospital of Philadelphia.  In 2015, she launched the first international registry of CSS patients. Dr. Vergano formerly served as the Division Director of Medical Genetics and Metabolism at The Children’s Hospital of The King’s Daughters in Norfolk, VA. She is excited to continue to build the registry at Seattle Children’s and see individuals with CSS in clinic.

Dr. Santen is a clinical geneticist at Leiden University Medical Center in Leiden, Netherlands

“My inspiration flows from the patients I see and the questions they have: it is a joy to continuously work on improving our ability to diagnose rare diseases, increasing the information we can give patients, and starting the search for treatment options. My group focuses on Coffin-Siris syndrome as a model for rare disorders, and on broadening the application and increasing the impact of extensive genetic testing, for example, during pregnancy.”

Emily earned her master’s degree in Human Genetics from Sarah Lawrence College. She has over 15 years of experience working in the field of genetics as a clinical and researcher genetic counselor caring for individuals and families with inherited genetic conditions. She leads a team of genetic counselors in the Department of Ophthalmology and Ocular Genomics Institute (OGI) at Mass Eye and Ear, in Boston MA. Prior to joining the team at Mass Eye and Ear, she worked in the Clinical Genetics Department at The Children’s Hospital of Philadelphia. Emily is a parent of a child with ARID1B related CSS.

 Dr. Miller is a Clinical Geneticist at Seattle Children’s Hospital and runs a lab at the University of Washington where he is currently working on a CSS Epigenetics Study. Their goal is to build a database of epigenetic signatures, which are modifications that our cells make to DNA that can be detected using newer sequencing technology. These modifications can help us understand whether a DNA sequence change is likely to cause CSS and perhaps someday help us understand how severely someone may be affected when they have a DNA sequence change in a CSS-related gene.

Dr. Tim Feyma is a pediatric neurologist at Gillette Children’s Hospital in St. Paul, MN. Dr. Feyma specializes in epilepsy and seizures, developmental delay, and genetic syndromes among other neurologic conditions.

Eddie will be 26 in March 2022 and has an ARID1B variant. Eddie lives in Massachusetts with his family and is currently studying to get his Associates Degree in Hospitality at Cape Cod Community College. He works in the kitchen at White Cliffs Country Club doing a variety of jobs from dishwasher to prepping food. Eddie received the 2020 Student Chef of the year Award from the local chapter of the American Culinary Federation. In August 2021 he passed his drivers license exam and loves his new found freedom! In his spare time he loves to do jigsaw puzzles, word searches and play video games. Eddie loves being part of the CSS Foundation Self Advocate team and helps with being a welcoming face for our community. He’ll also be helping with Foundation Facebook posts and planning a Young Adult event at our summer conference!

Mollie-Aidan is 19 years old and just graduated from a local high school for kids with learning disabilities.  She was first diagnosed when she was 11 years old and has a deletion in the ARID2 gene. Some of her CSS related challenges have included kidney reflux, growth hormone therapy, sensory eating issues, low muscle tone, learning disabilities, ADHD, auditory processing disorder and expressive speech disorder.  She likes to say that CSS makes her special and unique.  

Art is her jam and she is happiest when she is coloring, doodling and drawing.  Mollie-Aidan lives with her parents in Virginia.  In the fall Mollie-Aidan will attend her local public high school as a Super Senior where she will learn life skills and do some career training.  She is excited to serve on the Self Advocate Advisory Board and looks forward to seeing all her friends at the conference and to meeting new friends.

Marky is 19 and lives in Maryland. He is finishing up high school as a homeschooler. Marky especially enjoys any and all field trips. Marky loves to listen to music, especially Disney songs and any musical. He is part of Pegasus, an acting troupe for teens with disabilities. He enjoys all types of art classes . He hopes to help social activities for teens/young adults and to be involved in planning for the upcoming conference.

Victoria is an 18 year old high school student and passionate self advocate for Coffin Siris Syndrome. Diagnosed with CSS – ARID1B in December 2021, Victoria continues to thrive despite numerous  challenges and surgeries, demonstrating a strong focus on her independence, education, and future goals. Victoria is highly motivated by her growing independence and enjoys taking the initiative. She finds great satisfaction in helping others, especially younger children, and enthusiastically  participates in activities like the “Buddy Up” program. Her personal mantra, “I can do this,” is essential for helping her overcome challenges. Victoria has big dreams for the future! She hopes to one day work at an animal reserve, pet store, or animal shelter, as she has a deep love for animals. Being a self advocate means a lot to Victoria and being able to show what she can do is something she is very proud of. 

Matthew is 22 years old and lives in Calgary, Alberta with his parents. Matthew was diagnosed with CSS (ARID1A) at 16 years old. One phone call explained everything special about him: congenital midline malformations, plastic joints, scoliosis, profound speech delay.
In the winter time, Matthew enjoys skiing and watching the local professional lacrosse team. Matthew snowshoes and plays floor hockey through Special Olympics. Summers are spent camping all over western Canada in his family’s motorhome. 
Matthew attends a day program during the week and works at the local food bank on Fridays. He gives the world’s best hugs!